Overview

My primary research interest is related to the care of children with medical complexity. These children typically have multi-system chronic conditions, disabilities, high health care utilization and high home/community care needs. They are expanding in number as infants and children are surviving extreme prematurity, critical illness and previously life-limiting genetic conditions. Specifically, I investigate different models of care that can provide optimal support to these children and their families. I am also interested in management of symptoms such as pain, which is often the focus particularly if curative treatments are not available. I participate in both national and international consortiums who are working together to address these issues on all levels - research, quality improvement, education and policy.

Research

Optimizing the Management of Pain and Irritability in Children with Severe Neurological Impairments.
The purpose of this project is to develop, test, and disseminate a new approach to reducing and resolving pain in children with developmental brain disorders, specifically those with severe neurological impairments (SNI). It focuses on the problem of ongoing, unexplained, and difficult-totreat pain and irritability that many children with SNI, and their families, experience. Our goal is to improve the assessment and treatment of pain and irritability in children with complex health conditions and multiple disabilities who have limited communication and cognition. These children are amongst the most vulnerable seen in any hospital or clinic. Our plan is to evaluate the effectiveness of an integrated clinical pathway (i.e. a sequential order of standardized

Coached, Coordinated, Enhanced Neonatal Transition (CCENT): A multi-centre mixed-methods pragmatic randomized controlled trial
Technological advances have led to dramatic increases in survivors of neonatal intensive care, however this often after prolonged and intensive hospital admission. Parents of these infants are known to have increased anxiety, stress and depression that can interfere with attachment to their infant . This study will test the implementation of a nurse navigator model aimed at parent coaching using the acceptance and commitment therapy framework to see whether this will decrease parental stress and improve well-being and attachment. The nurse navigator will support both coaching and coordination of care functions for the first 12 months after NICU discharge. The study design is a randomized controlled trial, which will be followed by comprehensive outcome measurement at 12 and 18 months, including parenting success, parental stress, child development and parent empowerment.

Use of Bedside Home Videos to Impact Patient and Provider Satisfaction with the Inpatient Care of Children with Medical Complexity
Children with medical complexity frequently require hospital admissions and thus are often in the care of unfamiliar health care providers (physicians, nurses, allied health). Their baseline health status, neurodevelopmental condition and communication abilities are often different from the typical child, which can make it difficult for professionals to provide care and communicate with families. This study is testing the use of a bedside home video to facilitate communication and understanding when these children are admitted to hospital. Parents will shoot the footage and determine content based on what providers need to know. The vidoes will be displayed when the child is admitted to hospital and parents/providers will be asked to complete surveys rating satisfaction and feasibility.

Grants

CHILD-BRIGHT Network, Canadian Institute for Health Research, Strategy for Patient-Oriented Research